| 10.5°C Dublin

A race against clock for brave Liam and Saoirse

FRIENDS of the brave siblings who are battling deadly Battens disease have raised more than €400,000 for their life-saving trip to the US -- as the clock is ticking for the two seriously ill children.

Saoirse (5) and Liam (2) Heffernan have both suffered setbacks in their fight against fatal Battens disease, and their parents are devastated that Liam has shown symptoms for the first time.

Their father Tony told the Herald: "Saoirse is not too good. She's improved compared to the last two weeks but she's now blind and she can hardly speak anymore.

"We're just modifying her medication which will hopefully bring back some speech."

He added: "Liam unfortunately has also started having seizures which is a year and a half earlier than is usual, and he has about 40 seizures a day."

Tony and his wife Mary are enduring an agonising wait for American doctors to accept Saoirse for stem cell surgery, because without it she won't survive.

Battens disease is a rare, genetic, degenerative neurological disorder that usually becomes fatal in children by the age of eight to 12.

"We're anxious at the moment about time, and we've been phoning America and they will inform us, and all of the other families are still waiting as well so we're all the same," explained Tony.

"We've kept her at home because it's the best place for her. Hospitals are not a great place for her in case she picks up something. They're only good when she's really sick."

The brave brother and sister who require 24/7 round-the-clock care still have a good quality of life thanks to their family's loving care and attention.

"Saoirse is still a loving girl, having fun, smiling and enjoying life with a little bit of tomfoolery. And Liam is a great young fellow -- we just need to watch them," said Tony. "We're still waiting on the HSE to supply us with nurses. Saoirse always needed 24-hour supervision.", and myself and Mary have been doing it in turns, but now we need nursing care as well."

Meanwhile, the highest boxing match ever held in Ireland will take place in aid of Bee for Battens on Carrauntuohill at 3,414 feet above sea level next August 14.

Irish boxers Willie 'Big Bang' Casey and Philip Sutcliffe will climb Ireland's tallest mountain before they fight on a boxing ring which will be airlifted onto it.

Some 30 volunteers will accompany spectators and the two fighters and carry all of the equipment required for the high-altitude fight.

And Kieran Flynn will compete in a motor rally across five European countries in five days from September 4 to 8 in aid of Bee for Battens.

Tony said: "I think they'll really highlight the charity and the disease, and hopefully more people will look into it."

Donations can be made to Allied Irish Bank, Main Street, Kenmare, Co Kerry, account number 06040095, sort code 93-63-24, or go to www.beeforbattens.org